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Posts tagged as #ehlersdanlossyndrome on Instagram

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My sweet Luna! The best cat in the world! On a bad note my tongue is injured. Geographical tongue on the entire surface. I can’t eat anything because of the pain. Thanks Ehlers Danlos syndrome! It’s always something #ehlersdanlossyndrome #ehlersdanlos #ehlersdanlosawareness
I’m trying really hard to remember this right now. Pain cannot win today. I feel a bit swallowed by it right now. Having the fevers on top of normal pain is exhausting and I feel overwhelmed today. I’m really hoping tomorrow will be better. I have another meeting with my job coach. This time I really need to discuss if she thinks I’ll be able to work. As much as I want to work, I worry my health is to bad. Trying to thinking about going to a job today is scary. I wouldn’t have been able to go period. So tomorrow is important and I’m hoping I can make the right decision. I hope I can get some sleep tonight even with the pain.  #chronicillness #chronicpain #chronicpainwarrior #ehlersdanlossyndrome #pots #potssyndrome #dysautonomia #autonomicdysfunction #hipdysplasia #hippain #pao #invisableillness #brainfog #potsie #everythingwillbeok #icandothis #tomorrowisanewday #dysautonomiasucks #painsucks #youarestrong
Jeg jagten drømmen om at være rask - så rask som muligt, i hvert fald! Vækkeuret ringede kl. 4.30 og styrketræningen er klaret! 💪  #styrketræning #træning #sclerose #sclerosetræning #eds #ehlersdanlossyndrome
#repost @mienfermedadinvisible (@get_repost) ・・・ 🌘Apenas se va la Luz mi Disautonomía empeora, 😰 el Calor Acelera muchísimo mi Corazón 💓💔 .  Me baja la tensión, me mareo, me cuesta respirar y no puedo dormir. Me Deshidrato, y mis dolores se triplican. . Eso es Venezuela ahora, ni siquiera me alcanza para comer lo que me cae menos mal y tomar mis medicinas. . Necesito salir del país cuánto antes y comenzar mis trámites. . 🆘Necesitamos aún 800$ para viajar a Colombia y solicitar nuestras visas y recibir mis alimentos y medicamentos para poder viajar a USA.🆘 . ⚠️ ESTA ES UNA SOLICITUD URGENTE, NECESITAMOS TU APOYO.  COMPARTIR ESTA PETICION POR TUS REDES AYUDA MUCHO. ¡GRACIAS DE ANTEMANO! . @mienfermedadinvisible .  www.gofundme.com/arlensiumienfermedadinvisible . . .📷 @psicoespontanea . . #pots #ehlersdanlossyndrome #gastroparesis #dazzletogether #dysautonomia #rarediseases . . #venezolanosennewyork #venezolanosenmiami  #venezolanosenorlando  #venezolanosenpanama #venezolanosentexas #venezolanosenusa  #venezolanosendoral
So, if you’ve been following me for a bit you know that chronic pain is a big part of my life and has been one of my biggest struggles and in turn one of my greatest teachers. It’s taken me a long time to get to the place I am today ( it’s not always pretty, I CRIED A LOT today from extreme hip and neck pain) but I’m light years away from where I used to be and find I’m mostly bathing in the relief I’ve found through my meditation practice. When I’m struggling to find relief in my own practice and need more support I turn to my friends @neurovella. It is in this place I know I will find a deeper place of calm, less pain and the anxiety that surrounds it all dissipates. They offer the most relaxing breathwork practice that’s gentle and dreamy (my new go to). “Neurovella Brain Spa provides innovative therapies to alleviate symptoms of #pain, #stress, #anxiety, #depression, #ptsd, and other neurological conditions. Neurovella offers therapies such as virtual reality guided meditation, immersive meditation chair experiences, brain wave entrainment, and more.” If you’re in the LA area and are in search of relief please please please make an apt and try for yourself. You will be met with open arms and immense support on your journey of healing and better health✨🙏🏼 #alternativemedicine #chronicpainwarrior #meditateonthis #breathedeeplynow #vr #neurovellabrainspa #nourishthyvessel #neuroscience #brainmapping #vrtherapy #brainhealth #acuteillnes #lymedisease #ehlersdanlossyndrome #ankylosingspondylitis #heal #bodylove #patterninterrupt
Haircut by the hubs 🖤🖤 he is my knight in dark armor and my barber 💈 😂 #behappy #marriage #married #couplegoals #undercut #haircut #love #blogger #spoonie #ehlersdanlossyndrome #chronicillness #awareness #lovehim
A reality post. My life is so full. Full of love, friendship, beauty, travels, learning and struggles. I love sharing the good because that’s what I like to focus on but I also want to remain as authentic as one can on social media! I haven’t posted about the challenges in awhile so in all transparency here is an unfiltered photo of what my average night looks like: bed, stabbing myself in the chest, infusing meds that help but aren’t perfect, and getting back in bed 💉 What does your typical night look like?
This is what happens when you are allergic to adhesive and dermabond, and BOTH get put on you after surgery. I understand adhesives aren't always avoidable, but I made absolute sure everyone knew I was allergic to dermabond skin glue and could not have it. Reading my op report today, I see it notated that it was used along with the steri strips. Theres nothing I can do about it now, other than beg for some allergy meds because so far benadryl and hydrocortisone cream isn't helping. Plus I cant get cream near my incision anyway. So frustrating. As if recovering from what my surgeons have told me is "the most painful surgery they do", I have to deal with an unbearable itching as well. Hopefully I can get a hold of the doc tomorrow and get on some better medication to get this under control because the hives are continuing to spread 😖😫 #ehlersdanlossyndrome #ehlersdanlos #zebrawarrior #chronicillness #hypermobility #cervicalinstability #chronicpain #migraine #anxiety #heds #depression #mayoclinic #invisibleillness #cervicalfusion #antlantoaxialinstability #neckbrace #allergicreaction #itchyasf**k
Pain pain go away.  Prolotherapy therapy, first treatment yesterday. Sore. Stiff. Bruised. But already noticing difference. #prolotherapy #chronicpain #chronicillness #intractablepain #eds #ehlersdanlossyndrome #hypermobility #edswarrior #mybendybody #medicinalmarijuana #leaflinelabs #tattooedchick #hashtag
My stomach is not really letting me eat right now and the scale drops again!  I try to give myself a break from solids as much as I can. There are some days I can actually eat at least once a day, so I just pray for those days! I never give up trying to eat and I never will!  #ehlersdanlossyndrome #zebrastrong #nevergiveup #gastroparesis #spirituality #therearegoodandbaddays #inaflare #liquidsandensure.
Life is beautiful, right? Now that I have your attention, please consider donating to help a beautiful, sweet woman in dealing with her medical difficulties. We all want to enjoy life everyday, but some people don’t get that luxury. This sweet girl has EDS, something near and dear to my heart, as I have it too. She has a struggle much harder than mine, yet she is a radiant light in this world and needs your love and support. If you’re able to donate, awesome! If not, words of support are helpful too! Visit the go fund me! https://www.gofundme.com/f/Ehlers-Danlos-Syndrome-Emergency-for-Sara-Geurts #eds #ehlersdanlossyndrome #ehlersdanlos #love #support #medicalneeds #gofundme #donate #goodvibes #positivevibes #helpeachother
So I finally finished my article on disability and sex, becuase it is NSFW its linked in my bio (RCIH.net latest blog post) and I finally got a real URL and linked it to my site!  Ps: This a real vibrator based off of the eggplant emoji, and if you want to get one you can get it at emojibator.com (also photo credit to them) [Pic id: a white hand with black nail polish holding a vibrator based off of the eggplant emoji with a purple body and green top)  #chronicpain #ehlersdanlossyndrome #chronicillness #ehlersdanlos #eds #potssyndrome #lyme #cripplepunk #cpunk #potsie #ptsd #cptsd #disability #invisibledisease #invisibledisability #mcad #mcas #disabilityandsexuality #disabilityandsex #sex #sexanddisability #sexandchronicillness #vibrator
. soo i had a brain MRI today. which was not fun. after seeing the neurologist about my tics she wanted to do some tests on my brain just to make sure i may not have an underlying cause for them. tomorrow i go in for an EEG as well. definitely was not expecting all this but i’d rather be safe than sorry. my tics have been worse lately and i’ve had lots of “attacks” i suppose where a bunch of them go off at the same time for a time. i’m also noticing a few more things i never realized we’re tics before, more complex ones like cracking my wrists or neck repeatedly. tonight i gotta keep myself awake until at least 3am because i have to be sleep deprived for the EEG tomorrow afternoon, even though i have class in the morning 🤦🏻‍♀️😓 also they gave me flowers after my MRI and i was like aww ok that’s nice, but then i was like wait... should i be concerned?? 😐 lmao they had more behind the desk so i just assume they give some to everyone for some reason. at least i hope 😬  4|23|19
There’s nothing like the feeling of de-accessing your port and getting on your mermaid mode🧜‍♀️ . . .  #chronicilness #ehlersdanlossyndrome #ehlersdanlos #beachlife #beachlife #spoonie #beach #happy
INFUSIONS•  This girl CAN, but her wallet definitely fucking CANT. 🥵  This week is my 6th week doing IV hydration infusions. Currently, I am on three meds, multiple times a day for my POTS, and alone- meds just wasn’t working. Whenever I’m upright- even sitting- my BP and Pulse shoot up. When upright, i get pre-syncope, severe nausea, and I overheat and pour sweat from head to toe (no I’m not a gross person, I have really good hygiene) it’s just my autonomic nervous system acting like an absolute dick.  Anyways, so my doctor decided to add infusions to my treatment, 2x a week at my local hospitals infusion center. And holy shit- why is a bag full of salt water so goddamn expensive??? My co-pay alone is $80-100 (that’s twice a week) and then the infusion center charges my insurance $846 an HOUR to sit in a chair🧐 The co-pay alone is bad enough, as someone who is only on disability, but then I got my (explanation of benefits) from my insurance and they’re saying I owe the hospital ($400!!!!) for my first infusion. ......I’ve had like 8 infusions since then 🥺 Like...what the fuck am I suppose to do here?  I have good, private insurance so I have no idea why this is so expensive? Is it the infusion center? I know my insurance covers home infusions, but Idk if that’s more or less expensive, and there is NO WHERE to find this information. Ive called EVERYONE. So I have no idea how to compare prices to make this a treatment I can afford. Because the combo of the meds plus the infusions, is the only thing that gives me any relief, even if it’s only 48 hours worth of relief. I can go into my infusion with a blood pressure of 160/115 pulse 125, have 2 liters of fluids, and come out with my BP 107/68 and a pulse of 70. So like....this really works for me, but the price tag DOESNT.  I do not want to spend any more time wasting away in this bed, and this is the first thing to give me hope in almost 2 years. If you have ANY experience with infusion
There is nothing more fun than a hard day of PT doing additional testing just to prove to management PT is necessary. There's always some kind of hoop to jump through. Thankfully Mr. Duke did his doggy best to make life good again ☺ Way to go Mr. Duke 🐶 . . . . . @dukesdailyadventures . . . . #physicaltherapy #pt #spinalfusion #fusion #spinalfusionsurgery #ehlersdanlos #ehlersdanlossyndrome #edsawareness #invisibleillness #invisibledisabilities #abilitynotdisability #chronicpain #chronicdisabilities #chronicillness #rawandreal #healthjourney #butyoudontlooksick #bealeader #livewithpurpose #socialimpact #spoonielife #spooniesteong #zebra #zebrastrong #doglover #labmix #dogsofinsta #goldenretriever #labradorretriever #dogsarethebestmedicine
• Confidence post. I have always been someone that has hidden her arms or her legs or her neck or even her face but gradually I have started to come out of that habit as I shouldn’t be constantly made to feel that my scars or wounds are disgusting and disfiguring and without my boyfriend I don’t think I would of begun to start this change.. This last week has been more than a roller coaster and now finding out that my tutor has still not marked my work and I’m basically being forced to take an extension when in reality this mistake is not my fault and I know for a fact if I accept the extension it’ll mean I’ll always need one. I feel like as a disabled student universities are so quick to accept us but just don’t know how to accommodate us and it just pisses me off. Sooo this sums up my day. #chronicillness #chronicpain #chronicpainwarrior #fibromyalgia #eds #ehlersdanlossyndrome #chronicfatigue #fibrowarrior #pcos #potssyndrome #reader #writer #read #writing #dysautonomia #disability #disabled #food #foodie #foodporn #blogger #spoonie #spoonielife #snapchat👻 #snapme #thick #snapchatfilter #snapchatfun #travelling #snäp
Does anyone else feel like they're being punished for having to wear these masks all the time? Cause I do. Having a crappy immune system stinks, but going into public, trying to live my life, be a somewhat productive member of society, my body makes it really hard for me to keep up. The masks arent fun but they keep me safe! I work full time and whenever someone has a cold or honestly the slightest sign of sniffles I'm stuck with this hot thing on my face all day. Sure it could be worse but some days I just plain feel punished. ♡my new vlog is up now. I rant about my steroid withdrawals this week♡  https://youtu.be/CqPt-ShQiNg  #ehlersdanlossyndrome #eds #hypermobile #zebrawarrior #pots #multiplesclerosis #migranes #fatigue #musclespasms #dysesthesia #dysautonomia #insomnia #nausea #chronicpain #disability #spoonie #chronicillness #msawareness #anxiety #mswarrior #mssucks #advocate #invisibleillness #notalldisabilitiesarevisible #servicedog
The continuation of our Game of Thrones marathon has been really good for grooming sessions! Do yourself a favor and always keep your poodly doodly clipped short. It’s a 1-3hr groom everyday with my hair long like this! But I am so excited that we are finally doing the big shear this weekend! And then my girl can spin my wool into yarn and knit me into a hat.  #siriusblackservicepup #gameofthrones #nerdlife #poodlelife #fangirl #servicedogintraining #floof #fluffy #doggroominglife #doggrooming #poodle #yarn #knitting #spinning #dogfiber #poodlewool #servicepoodle #servicepoodleintraining #edsservicedog #edsservicedogintraining #potsservicedog #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #migraines #chronicpain #chronicillness #younganddisabled #gastroparesis
I should get back into modeling. who’s down to shoot soon? Amazing work done by @garrettouille
Seems like we still have some "winter days" over here in Montreal, Canada ❄❄... 🙄🙄 lolll But we're almost done toooo! Hihihi! 💪🏼 . . And yes, you saw right: I'm at the gym!! Not to workout yet, just looking at some exercises for a friend..! Another 2 weeks mandatory of recovery, up to maybe a month, I'll know in 2 weeks... I can't wait!! 😁😁⏳🕒 . . . #spoonielife #spoonie #spooniemotivation #fitnessgirl #spooniehealth #chronicallyill #chronicillnesslife #chronicillnesswarrior #chronicpainwarrior #gastroparesislife #gastroparesiswarrior  #ehlersdanlossyndrome #wheelchairdiva #wheelchairfashion #fibrolife #hysterectomyrecovery #wheelchairathlete #heelsandboots #sexyboots  #wheelchairbeauty #mswonderwoman #outfitoftheday #multiplesclerosisfighter #sexystyle  #mslife #wheelchairbarbie #sexysiciliana #fashionista #girlswholift
I was reluctant to post this, but “invisible illnesses” deserve more awareness. Yesterday, I was diagnosed with something that will change my life forever. I have a rare genetic disorder called Ehler Danlos Syndrome. It’s an extremely rare connective tissue disorder that causes a wide variety of issues. For my entire life, I’ve had severe hip problems that were ignored by more doctors than I can count. My hips pop out of socket on a regular basis, I can pop my knee out of socket and do things that aren’t “normal” but until yesterday, I was told everything was ”fine”. For almost 8 years I’ve had severe vascular issues that some of the best hospitals in the country chose to ignore. For my entire 23 years of life I’ve had severe gastric issues and had been hospitalized more times than I can count for uncontrollable vomiting. I’ve broken so many bones I’ve lost count. This disease, was something I was born with. This is a disease I’ve had to unknowingly deal with for 23 years with no answers. Because this went undetected, I now suffer complications from it. I now have severe arthritis on top of an already excruciating disease. Having an immune disorder (CVID) and Ehlers Danlos is something I will always have. Lately I’ve had more bad days than good ones and I’m still learning and adjusting to my body’s new limits. This post is not me asking for pity. It’s for awareness, invisible illnesses really do exist. This post is also for anyone who has ever felt alone struggling with their own illness. • • • • • • • • • • • #ehlersdanlossyndrome #ehlersdanlos #cvid #chronicillness #chronicpain #faith #hope #health #mentalhealthawareness #instagram #insta #instadaily #instagood #likeforlikes #like4likes #awareness #spreadlove #likelike #medicine #medical #pain #sharethelove #staystrong #staypositive
So apparently the first time I posted this, everything I wrote in the caption had disappeared! Sorry about that! Anyway, I shipped these 5 packages today, if you’re tagged then one of them is yours!! They will arrive by Saturday. I can’t wait for you guys to get them!! 💚 #chronicillness #chronicpain #chronicfatigue #ehlersdanlossyndrome #fibromyalgia #mastcellactivationsyndrome #posturalorthostatictachycardiasyndrome #irritablebowelsyndrome #gastroparesis #feedingtube #cysticfibrosis #chronsdisease #lymedisease #chronicillnessawareness #chronicillnesswarrior #zebra #chroniczebra #🦓 #donations #donate #donation #donationsneeded #paypal #amazon
Hi everyone, in case you’re wondering why I’m not on the webcam tonight, it’s because I chewed some skin from my leg today. So, my new mom (vet tech) took me home for the night, where she can watch me. 👁  So much more fun here! 🥳 . .  #felinecutaneousasthenia #ehlersdanlos #ehlersdanlossyndrome #ehlersdanlosawareness #ehlersdanloscat #zebrawarrior #vetmedicine #veterinarian #veterinarians #vetchannel #fivcatsneedlovetoo #fivcats #fivcatsofinstagram #fivcatsrule #catinjury  #cats_of_world #specialneedscats #catspottingsociety #catsofinstagram #catsofinsta #bestmeow #animalrescue #savealife #shelteranimal #felinefriends #postoftheday #adoptdontshop #specialneedsparent
Keep reading if you like drugs (or health updates) 😝 Took a bit of a road trip with my mum to see my pain specialist today. I scheduled the appointment to discuss increased heart pain, increased rib slipping, limb tingling, extreme sensitivity to marijuana smell, nausea, & worsened headaches. Thankfully, my specialist had two hours 🙏🏻 I am adding five new medications to my regimen. FIVE. Just when I'm beginning to feel like myself again, I get to play with my brain chemistry like I'm playing Hungry Hippos 🦛 With addiction in my genes, I have mixed feelings for drugs. I'm overwhelmed. I'm scared. I'm hopeful. I'm strong enough to handle oral ketamine & oxytocin. Other than meds, I am looking into prolotherapy, genetic testing, & I'm supposed to limit fragrance (would be a hit at my quality of life so probs not). Oh, I also might have a new condition - mast cell activation syndrome 💁🏻‍♀️ I'm exhausted & need to process. So, I'm going to work on an application & set my workout alarm for the morning 💪🏻 #eds #ehlersdanlossyndrome #mastcell #pots #pectusexcavatum #slippingribsyndrome #medication #hungryhippos #warmdays #prolotherapy #chronicillness #invisibleillness #spooniesisterhood #spooniestrong #chronicwarrior #chronicallytaran
Today I had my first sports medicine appointment and I can’t tell you how gratifying it is to feel seen. After many doctors and specialists seeming overwhelmed by what I have to say and knowing absolutely nothing about EDS or knowing so little that it’s no help at all, he not only knew what to look for in a person with EDS, but knew tips and tricks to help me in the long term, answered every question I had and set me up with hand therapy and full time PT. I hope everyone who suffers with chronic illness can finally find peace in the madness with medical professionals who truly listen, help and guide you to where you need to be. 🖤 I hope everyone has a no-symptom day filled with all the spoons. 🤘🏻 #ehlersdanlossyndrome #sportsmedicine #thisiswhathopefeelslike #physicaltherapy
Life is hard. Even little things are challenging. People are cold and disconnected. It is dangerous to honk your horn in traffic now. Doctors ignore science, more importantly they ignore people while medical teams won’t collaborate or effectively communicate for the health of a patient. Not even a child. There’s never enough to eat in this house. I need a massage therapist, chiropractor, physical therapist, oral surgeon, etc. but there aren’t enough funds. There’s never the exhale, the woosah, the peace of mind. Fucking be awesome anyway. I’m being awesome today so you can try tomorrow. #beawesome #beawesometoday #chronicpain #ehlersdanlossyndrome #americanwealthcare #specialneedsmom #spoonie #cantstopwontstop #thisishard #povertysucks #beawesomeanyway
So here’s something cool that happened today. My hip has been really really bad as you know. It went from excruciating and I might just burst into flames at any moment because I can’t handle one more speck of pain, to at least I don’t feel like I’m on fire but everything still hurts. Also my shoulder left shoulder has been a significant amount of pain lately - a real tight painful feeling like I can’t really move it much and it’s stuck. So that’s been awkward. And I have my regular foot pain knee pain etc. But I took 6 mg of methyl folate last night instead of my regular one or 2 mg because when I went to see Dr. Phillips yesterday he said that 15 mg was a therapeutic dose and to take 20 mg of B12 for my strange neuropathies throughout my body. He did not mention that it would help my hip pain so I was super surprised this morning when I woke up and I was able to sort of move normally. It’s still her laying in bed but when I got up I was able to walk without pain.Anyways I was taking my bath today after several doctor visits and thought I’d share with you what happened. I talked to a Nother line patient earlier this evening and her friend had depression and hip pain and when she took the higher dosage of the methyl folate that helped her pain and depression. So there’s definitely something with the hip and methylated B. .how many mg do you take? Ask your dr what they think.. .. .with VIPo2 mask on my face. @biologique_recherche_usa #vipo2 . . #mthfrgenemutation #mthfrgenemutationtreatment #methylatedb #methylfolate #methylatedb12 #hippain #depressionhelp #depressiontreatment #ehlersdanlossyndrome #ehlersdanlostreatment #lymeandehlersdanlossyndrome #seversdisease #lymetreatment #hippaintreatment #musclepain #tendonpain #bathtimewithlyme #lyme #turpentinebath #bartonella #babesia
Doing good post-op! Finally got my mom to text them to me. I've been back home a few hours with my shiny new port.  #potssyndrome #pots #ehlersdanlos #ehlersdanlossyndrome #zebrastrong
I sure was cute #chronicbadass #ehlersdanlossyndrome #eds #idiopathicintracranialhypertension #pseudotumorcerebri #shuntlife #chronicillness #chronicpain #spoilmynight
I’ve been hesitating all week about whether to post this, but ultimately I think it’s important to share—I’m now on the Butrans patch for pain. It is an opioid- more specifically, a partial opioid antagonist. It doesn’t get you high, but it still provides significant pain relief. I was initially worried about telling my mother, partner, and friends because of the stigma attached to opioids and the worry that I would get labeled a junkie or be on the receiving end of unsolicited advice and worried glances. Most of my peers here in rural Maine tend to believe CBD and weed will cure all that ails you, but unfortunately, those things haven’t helped me nearly as much as this patch has. It’s has also helped me more than muscle relaxers, voltaren gel, steroid injections, NSAIDS, cymbalta, Tylenol, muscle rubs, Lidocaine, gabapentin , and lyrica have. I haven’t been this pain free yet clear-headed in 5 years. I continue to be closely monitored by my pain doctor (who is also chronically ill) and only  hope that it continues to help me and that the ongoing war on opioids doesn’t continue punishing pain patients like myself. #ehlersdanlossyndrome #ehlersdanlosgrrrls  #dontpunishpain #chronicallyill
it’s getting close to the one year anniversary of my official diagnosis and that’s rlly scary for me. one year kinda signifies a lot for me. in my mind, i should be used to having my chronic illnesses, i should be GOOD at having them but i’m not i don’t follow every rule every day, i slack, i have times where i’m really great at everything, and times where i can barely drink enough water. but it’s ok! you take each day one at a time and hold onto the small accomplishments you have every day. let the smaller things motivate you to achieve more and live better and healthier :) • #chronicillness #eds #pots #potsawareness #potssyndrome #ehlersdanlos #ehlersdanlossyndrome #chronicpain #tips #overcome #anxiety #depression
😰😢 Cada vez que se va la luz, Arlensiu se va deteriorando más...Necesito sacarla del país...ella necesita tu apoyo, pública su historia, multiplica  seguidores/ #repost @mienfermedadinvisible . . 🌘Apenas se va la Luz mi Disautonomía empeora, 😰 el Calor Acelera muchísimo mi Corazón 💓💔 .  Me baja la tensión, me mareo, me cuesta respirar y no puedo dormir. Me Deshidrato, y mis dolores se triplican. . Eso es Venezuela ahora, ni siquiera me alcanza para comer lo que me cae menos mal y tomar mis medicinas. . Necesito salir del país cuánto antes y comenzar mis trámites. . 🆘Necesitamos aún 800$ para viajar a Colombia y solicitar nuestras visas y recibir mis alimentos y medicamentos para poder viajar a USA.🆘 . ⚠️ ESTA ES UNA SOLICITUD URGENTE, NECESITAMOS TU APOYO.  COMPARTIR ESTA PETICION POR TUS REDES AYUDA MUCHO. ¡GRACIAS DE ANTEMANO! . @mienfermedadinvisible .  www.gofundme.com/arlensiumienfermedadinvisible . . .📷 @psicoespontanea . . #pots #ehlersdanlossyndrome #gastroparesis #dazzletogether #dysautonomia #rarediseases . . #venezolanosennewyork #venezolanosenmiami  #venezolanosenorlando  #venezolanosenpanama #venezolanosentexas #venezolanosenusa  #venezolanosendoral
Today was a day and a half. I tried getting out today since I had a really bad flare up this week, and at least 2 people nearly took out my cane because they were riding their bikes on the sidewalk. Being young with a disability is a fucking struggle.... BUT I MADE IT TODAY AND ONLY NEEDED TO REST IN BED ONCE #eds #ehlersdanlossyndrome #fibromyalgia #cripplepunk #cpunk #chronicillnesswarrior #actuallydisabled
Best friend and I got matching mini tattoos yesterday 🌺💕 I like the placement of hers better but I figured with the kind of jobs I want, I should avoid my hands. 🙄  Update on LDN treatment: it's been 1 week since I started it, and I honestly feel so much better. Whatever disconnect occurs in Fibromyalgia with the pain receptors is totally dulled...I still have some pain, but it's actually bearable now. I don't want to die all the time, which I'm counting as fantastic progress. My body is still adjusting...I'm kind of tired and a little foggy, but I'm excited to see where this goes!
For the last fourteen days I have been taking ten extra pills per day, split in two doses. I finished the course this morning and am SO GRATEFUL! There is growing research on the mechanisms of why people with #ehlersdanlossyndrome seem to have some form of compromised immune response... I wish I knew better why or how, but I catch EVERYTHING! Despite efforts to be extra prudent. At least #hpylori is supposedly something you can only catch once! And hopefully my pending labs come back clear of it! But I hate being on so many #antibiotics! On the headache front, I’m feeling alright! Woke up with notable #tmj pain, but that’s a different issue. My #physicaltherapist did some #manualmanipulation today to deal with that! And my #botoxformigraines is scheduled now. Managing #chronicillness is a dance, one you never get to stop, but I am at least some of the steps are becoming second nature. I’m tired though, it takes a lot mentally sometimes to manage, it’s not just the physical part. The constancy or it takes a toll mentally for sure. #invisibleillness #invisibledisability #migraine #heds #hypermobility #dysautonomia #mcas #mastcell #ibs #ibd #guthealth
🌘Apenas se va la Luz mi Disautonomía empeora, 😰 el Calor Acelera muchísimo mi Corazón 💓💔 .  Me baja la tensión, me mareo, me cuesta respirar y no puedo dormir. Me Deshidrato, y mis dolores se triplican. . Eso es Venezuela ahora, ni siquiera me alcanza para comer lo que me cae menos mal y tomar mis medicinas. . Necesito salir del país cuánto antes y comenzar mis trámites. . 🆘Necesitamos aún 800$ para viajar a Colombia y solicitar nuestras visas y recibir mis alimentos y medicamentos para poder viajar a USA.🆘 . ⚠️ ESTA ES UNA SOLICITUD URGENTE, NECESITAMOS TU APOYO.  COMPARTIR ESTA PETICION POR TUS REDES AYUDA MUCHO. ¡GRACIAS DE ANTEMANO! . @mienfermedadinvisible .  www.gofundme.com/arlensiumienfermedadinvisible . . .📷 @psicoespontanea . . #pots #ehlersdanlossyndrome #gastroparesis #dazzletogether #dysautonomia #rarediseases . . #venezolanosennewyork #venezolanosenmiami  #venezolanosenorlando  #venezolanosenpanama #venezolanosentexas #venezolanosenusa  #venezolanosendoral
I wish I could say I’m posting with good news, but I’m not. I’ve progressively gotten worse. I’m not urinating well on my own and an indwelling catheter will be placed for who know how long. My legs give out all the time and I now I have to use a walker. Next week I see hematology/oncology because I’m very anemic. I’m really weak and am having a hard articulating my thoughts and I’m confused and my memory is impacted. One of the hardest things is the social impact. People I’ve grown up with have moved on and I know that’s part of growing up but this is different. Sometimes I talk on the phone but it’s not the same. I cherish the few visitors I have. It’s so frustrating when I’m at the doctor and people look at me and say you’re too young or too pretty to be sick. Never judge a book by its cover! My pretty face and smile has hidden a really broken and tired body for so long now and I’m not smiling anymore. I appreciate so much all of the support of everyone here but I beg of you, if you have a friend or family member who is sick please don’t stay away from them. They need you more than you can ever imagine. I try so hard to be and stay positive but it’s hard. My physical pain is always there and continues to worsen. My mind and spirit are so very very tired. I try to respond to messages and I just can’t do it all. I’m so very sorry. #ehlersdanlossyndrome #nutcrackersyndrome #maythurnersyndrome #vascular #vascularsurgery #chronicillness #chronicpain #soverytired
Dear flu, I hate you! #normalpeoplesick on top of everything else :-( #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #fibromyalgia #endometriosis
Obviously I’ve had a lot on my mind since Friday. Just one thing, really, but it’s a big one. At first, when the rheumatologist diagnosed me with EDS, I was excited. Yay, I know what it is, and now I can fix it! But then in talking with her and researching, I quickly became deflated because no, I can’t fix it. I’m never going to not be tired all the time. I might always have pain, and it might get worse. I might develop osteoarthritis. I may never get rid of the depression that’s followed me since I was a preschooler. I’m never going to feel like what I imagine a healthy person feels like. And damn, that sucks. . . But now, you know what? I’m back to happy. It’s not like any of this is new to me. I’ve been managing it my whole life. I’ve always been tired, and I’ve always had a lot of these symptoms. The pain is new-ish, but only insofar as it lasts longer now than it used to. So I already know how to live this way. But now I can stop working so hard trying to find the exact right balance of nutrition and calories and water and sleep, stop trying to carefully choreograph my life in the hope of striking the magical combination that will make me feel better. That combination doesn’t exist, and it’s not my fault. Yes, I’ll continue to try to lead a healthy life, but when I have a bad day, I don’t need to scrutinize everything I did the day before trying to figure out where I went wrong. Because I didn’t. This is just how it is. And that’s kind of freeing.
Here's a very happy Faith and a smiling therapy pup to brighten your day. ☀️ ••• Lots of crazy updates for ya! ••• I was initially admitted for a pain flare, but after plenty of meds I'm back to baseline, thankfully. ••• Unfortunately, my nutrition and hydration status became unsafe. I've reacted to every formula I've tried, and yes I have tried a LOT. A PICC line was placed on Friday, and I'm on TPN again until we find a safe formula. ••• Because procedures are difficult for my mastie, stretchy body, I was under general anesthesia for the line placement. IV pain meds have been my friend during the recovery process. While I don't want to need them, they are beneficial when I do. ••• But my body decided that wasn't enough for one admission! ••• Late Sunday night, my stoma (the hole where my feeding tube lives) started leaking! 😳 My weight changed and my tube is too long. A sudden tube replacement is scheduled for tomorrow morning. ••• With no definite discharge date in sight, I'm facing the week with more discouragement than I'd like. And ya know what? That's okay. I just have to take it one day at a time.🌼
After getting done with a 12 page research paper on Prosecutorial discretion I am wiped out.  #ehlersdanlossyndrome #chronicpain #chronicillness #lupus #mitocondrialdisease #adulting #adultingishard
I don’t wanna define myself by my pain. I don’t wanna live with this my whole life or be held back most of my life. I want it back..
DIAGNOSIS CHANGE? • We thought I had CNS vasculitis which means my blood vessels in my brain were too constricted. It turns out my spinal fluid came back showing no signs of inflammation, so the diagnosis is now Reversible Cerebral Vasoconstriction Syndrome (RCVS). I guess there’s a distinction in the way my fluid looks under a microscope compared to CNS Vasculitis. -  The symptoms are almost exactly the same, but they are treated differently and RCVS always comes on with a sudden and severe headache. -  At this point the migraine medication they’ve given me has actually made me worse because they’re vasoconstrictors instead of vasodilators. At this point rheumatology is going to talk to neurology and decide whether they’re just going to do a calcium-channel blocker or a cc blocker and steroids. -  ETA: my neurologist just came back and said we still can’t rule out vasculitis because we need a couple specific tests and they take a few days to get back. So, I guess we’re keeping everything the same for now.
“If the machinery of the Law could be depended on to fathom every case of suspicion, and to conduct every process of inquiry, with moderate assistance only from the lubricating influences of oil of gold, the events which fill these pages might have claimed their share of the public attention in a Court of Justice. But the Law is still, in certain inevitable cases, the pre-engaged servant of the long purse; and the story is left to be told,” {Excerpt From The Woman in White} ~ Wilkie Collins 💐💛🌸 💛💖💜 ⚜️𝒮𝓅𝓇𝑒𝒶𝒹𝒾𝓃𝑔 𝓉𝒽𝑒 𝒢𝑜𝓈𝓅𝑒𝓁 𝓉𝒽𝓇𝑜𝓊𝑔𝒽 𝒞𝓁𝒶𝓈𝓈𝒾𝒸𝒶𝓁 𝐵𝒶𝓁𝓁𝑒𝓉, 𝒮𝒾𝓃𝑔𝒾𝓃𝑔, & 𝒜𝓇𝓉𝒾𝓈𝓉𝓇𝓎, 𝓌𝒽𝒾𝓁𝑒 𝓁𝒾𝓋𝒾𝓃𝑔 𝓌𝒾𝓉𝒽 𝐸𝒽𝓁𝑒𝓇𝓈-𝒟𝒶𝓃𝓁𝑜𝓈; {𝒱𝒶𝓈𝒸𝓊𝓁𝒶𝓇, 𝐻𝓎𝓅𝑒𝓇𝓂𝑜𝒷𝒾𝓁𝒾𝓉𝓎, & 𝒦𝓎𝓅𝒽𝑜𝓈𝒸𝑜𝓁𝒾𝑜𝓈𝒾𝓈}, {𝒫𝑜𝓈𝓉𝓊𝓇𝒶𝓁 𝒪𝓇𝓉𝒽𝑜𝓈𝓉𝒶𝓉𝒾𝒸 𝒯𝒶𝒸𝒽𝓎𝒸𝒶𝓇𝒹𝒾𝒶}, 𝒟𝓎𝓈𝒶𝓊𝓉𝑜𝓃𝑜𝓂𝒾𝒶, 𝑀𝒶𝓈𝓉 𝒞𝑒𝓁𝓁 𝒜𝒸𝓉𝒾𝓋𝒶𝓉𝒾𝑜𝓃, 𝒢𝐸𝑅𝒟, 𝒞𝐹𝒮, 𝐸𝓈𝑜𝓅𝒽𝒶𝑔𝑒𝒶𝓁 𝒢𝓁𝒶𝓃𝒹𝓈 𝒟𝒾𝓈𝑒𝒶𝓈𝑒, & 𝒞𝒫𝒯𝒮𝒟 {𝒫𝑜𝓈𝓉 𝒯𝓇𝒶𝓊𝓂𝒶𝓉𝒾𝒸 𝒮𝓉𝓇𝑒𝓈𝓈 𝒟𝒾𝓈𝑜𝓇𝒹𝑒𝓇}. ⚜️ 📽𝒜𝐿𝐿 𝓂𝓎 𝐿𝐼𝒩𝒦𝒮 📽 ~ https://linktr.ee/songshinedancer ~ 💐💛🌸 ~ My Bloodline?:💪🏻 🇬🇧 Norwich, Norfolk, {Mum}//Cuckfield, Sussex {Grandmum}//North Cumbria, England & The States 🇺🇸 {Granddad}; England {British through & through☺️} 👑 🇮🇹 Satriano, San Fele; {Dad & Nanna/Nanoo}Italy 🇮🇱 Gentile, but “Grafted in” as one of the seeds of Abraham ✡️✝️🕎
#legalism #thewomaninwhite #domesticviolence #ptsdawareness #narcissists #posttraumaticstressdisorder 💐💛🌸 💛💖💜 ⚜️𝒮𝓅𝓇𝑒𝒶𝒹𝒾𝓃𝑔 𝓉𝒽𝑒 𝒢𝑜𝓈𝓅𝑒𝓁 𝓉𝒽𝓇𝑜𝓊𝑔𝒽 𝒞𝓁𝒶𝓈𝓈𝒾𝒸𝒶𝓁 𝐵𝒶𝓁𝓁𝑒𝓉, 𝒮𝒾𝓃𝑔𝒾𝓃𝑔, & 𝒜𝓇𝓉𝒾𝓈𝓉𝓇𝓎, 𝓌𝒽𝒾𝓁𝑒 𝓁𝒾𝓋𝒾𝓃𝑔 𝓌𝒾𝓉𝒽 𝐸𝒽𝓁𝑒𝓇𝓈-𝒟𝒶𝓃𝓁𝑜𝓈; {𝒱𝒶𝓈𝒸𝓊𝓁𝒶𝓇, 𝐻𝓎𝓅𝑒𝓇𝓂𝑜𝒷𝒾𝓁𝒾𝓉𝓎, & 𝒦𝓎𝓅𝒽𝑜𝓈𝒸𝑜𝓁𝒾𝑜𝓈𝒾𝓈}, {𝒫𝑜𝓈𝓉𝓊𝓇𝒶𝓁 𝒪𝓇𝓉𝒽𝑜𝓈𝓉𝒶𝓉𝒾𝒸 𝒯𝒶𝒸𝒽𝓎𝒸𝒶𝓇𝒹𝒾𝒶}, 𝒟𝓎𝓈𝒶𝓊𝓉𝑜𝓃𝑜𝓂𝒾𝒶, 𝑀𝒶𝓈𝓉 𝒞𝑒𝓁𝓁 𝒜𝒸𝓉𝒾𝓋𝒶𝓉𝒾𝑜𝓃, 𝒢𝐸𝑅𝒟, 𝒞𝐹𝒮, 𝐸𝓈𝑜𝓅𝒽𝒶𝑔𝑒𝒶𝓁 𝒢𝓁𝒶𝓃𝒹𝓈 𝒟𝒾𝓈𝑒𝒶𝓈𝑒, & 𝒞𝒫𝒯𝒮𝒟 {𝒫𝑜𝓈𝓉 𝒯𝓇𝒶𝓊𝓂𝒶𝓉𝒾𝒸 𝒮𝓉𝓇𝑒𝓈𝓈 𝒟𝒾𝓈𝑜𝓇𝒹𝑒𝓇}. ⚜️ 📽𝒜𝐿𝐿 𝓂𝓎 𝐿𝐼𝒩𝒦𝒮 📽 ~ https://linktr.ee/songshinedancer ~ 💐💛🌸 ~ My Bloodline?:💪🏻 🇬🇧 Norwich, Norfolk, {Mum}//Cuckfield, Sussex {Grandmum}//North Cumbria, England & The States 🇺🇸 {Granddad}; England {British through & through☺️} 👑 🇮🇹 Satriano, San Fele; {Dad & Nanna/Nanoo}Italy 🇮🇱 Gentile, but “Grafted in” as one of the seeds of Abraham ✡️✝️🕎 {Adopted by The Father ~ Elohim} 🌾🌸🌷🌼🌱 ~ Mostly British & Italian, with 1/8 #mustee coming from The States ~ 🌾🌸🌷🌼🌱 🔱#ballerinaslife #singersongwriter #spooniecommunity #ballet_soul #classicalballet #balletlife #spoonies #spoonielife #tubie #ptsdsurvivor #ehlersdanlossyndrome #dysautonomia #dysphagia #cptsd #chronicfatiguesyndrome #vintagelifestyle #christianmusician
Last night while I was flossing two of my fillings fell out, once again proving that flossing is the worst. Had an urgent dentist appointment where DC performed DPT to keep me calm during the work. Like many people with PTSD, I struggle with the dentist. Having someone leaning over me is terrifying and often leads to a full blown panic attack. DC is a critical part of my ability to receive dental work without sedation. . . . . . .  #bordercollie #seizurealertdog #epilepsyawareness #mobilityservicedog #ehlersdanlossyndrome #chronicpain #servicedogtraining #positivereinforcement #servicedog #disabled #chronicillness  #bordercolliesofinstagram #dog #dogs #seizures #servicedogteam #marfansyndrome #servicedogsofig #servicedogintraining #igwoofs #ptsd #seizurealertdog #epilepsy #herdingdog #workingdog #ptsd #dogtraining #bordercolliesofinstagram  #workingdog  #panicattack #filling #dentist
It’s a “yes” to this.
Went to the @cincinnatizoo today and ended up in wheel chair for the first time! It enabled me to enjoy my experience even more and took away some of the pain from walking. Plus I had a great support system to try it out!! I’m so grateful for the amazing people in my life to help me have a great day even though it ended with me needing a wheel chair. . .  It’s important to remember that wheel chairs and other mobility aids are not less valid if you get up and laugh and look at exhibits to enjoy your experience. The whole purpose behind them is to make sure you’re able to the things that you enjoy and not miss out them. However, society will often tell you different. There will be people who will see a “healthy” person that can get up with no problem so why do you need a wheel chair/ mobility aid? Remember that they are not in your pain, and aren’t going to help you when you’re not able to get out of bed the next day. And for that matter, it doesn’t matter what they think! . .  Sorry for my rant but just remember that it’s your body and your health so take care of you!! 💕💜
Usually, I count my spoons 🥄 more than I count my blessings...then, something changed, this week it seemed as though my blessings outweighed my lack of spoons! God gave me more strength than I could ever imagine! Cleaned out three rooms, performed, holiday prep~making; it may not seem like a lot, but it’s improvement! Doctors may say there is no cure, but I have to believe I’ll heal, even if it’s a bit of improvement at a time! Thank You, Jesus! Help my unbelief! 💐💛🌸 #thespoontheory 💛💖💜 ⚜️𝒮𝓅𝓇𝑒𝒶𝒹𝒾𝓃𝑔 𝓉𝒽𝑒 𝒢𝑜𝓈𝓅𝑒𝓁 𝓉𝒽𝓇𝑜𝓊𝑔𝒽 𝒞𝓁𝒶𝓈𝓈𝒾𝒸𝒶𝓁 𝐵𝒶𝓁𝓁𝑒𝓉, 𝒮𝒾𝓃𝑔𝒾𝓃𝑔, & 𝒜𝓇𝓉𝒾𝓈𝓉𝓇𝓎, 𝓌𝒽𝒾𝓁𝑒 𝓁𝒾𝓋𝒾𝓃𝑔 𝓌𝒾𝓉𝒽 𝐸𝒽𝓁𝑒𝓇𝓈-𝒟𝒶𝓃𝓁𝑜𝓈; {𝒱𝒶𝓈𝒸𝓊𝓁𝒶𝓇, 𝐻𝓎𝓅𝑒𝓇𝓂𝑜𝒷𝒾𝓁𝒾𝓉𝓎, & 𝒦𝓎𝓅𝒽𝑜𝓈𝒸𝑜𝓁𝒾𝑜𝓈𝒾𝓈}, {𝒫𝑜𝓈𝓉𝓊𝓇𝒶𝓁 𝒪𝓇𝓉𝒽𝑜𝓈𝓉𝒶𝓉𝒾𝒸 𝒯𝒶𝒸𝒽𝓎𝒸𝒶𝓇𝒹𝒾𝒶}, 𝒟𝓎𝓈𝒶𝓊𝓉𝑜𝓃𝑜𝓂𝒾𝒶, 𝑀𝒶𝓈𝓉 𝒞𝑒𝓁𝓁 𝒜𝒸𝓉𝒾𝓋𝒶𝓉𝒾𝑜𝓃, 𝒢𝐸𝑅𝒟, 𝒞𝐹𝒮, 𝐸𝓈𝑜𝓅𝒽𝒶𝑔𝑒𝒶𝓁 𝒢𝓁𝒶𝓃𝒹𝓈 𝒟𝒾𝓈𝑒𝒶𝓈𝑒, & 𝒞𝒫𝒯𝒮𝒟 {𝒫𝑜𝓈𝓉 𝒯𝓇𝒶𝓊𝓂𝒶𝓉𝒾𝒸 𝒮𝓉𝓇𝑒𝓈𝓈 𝒟𝒾𝓈𝑜𝓇𝒹𝑒𝓇}. ⚜️ 📽𝒜𝐿𝐿 𝓂𝓎 𝐿𝐼𝒩𝒦𝒮 📽 ~ https://linktr.ee/songshinedancer ~ 💐💛🌸 ~ My Bloodline?:💪🏻 🇬🇧 Norwich, Norfolk, {Mum}//Cuckfield, Sussex {Grandmum}//North Cumbria, England & The States 🇺🇸 {Granddad}; England {British through & through☺️} 👑 🇮🇹 Satriano, San Fele; {Dad & Nanna/Nanoo}Italy 🇮🇱 Gentile, but “Grafted in” as one of the seeds of Abraham ✡️✝️🕎 {Adopted by
I have gotten a lot of questions about my port-a-cath after my previous post. Here is a picture of what my port looks like when it is accessed (has a needle inserted). This needle is in for a week so that I can do my treatments at home five times a week. Also, with my fragile veins caused by ends, peripheral IV lines are hard to insert and can collapse when doing an infusion.  #accessibility #photodescription [Sarah smiling at the camera holding the end of a tube attached to a needle that is in her port-a-cath.] #freedom #portacath #portneedle #lifewithaneedleinyourchest #accessedportacath #bardpowerport #chronicillnesswarrior #chronicpainwarrior #chronicillness #chronicpain  #ehlersdanlossyndrome #zebrastrong #dysautonomia #posturalorthostatictachycardiasyndrome #spoonie #chronicallyextraordinary
“We don’t stop playing because we grow old; we grow old because we stop playing.” – George Bernard Shaw  #quote ❤😍❤😍❤😍❤ #jabcross #speeddrills #padwork #boxingtraining  Www.facebook.com/efmacentre Www.facebook.com/carmensblog ❤ #ehlersdanlossyndrome #invisibleillness #spoonie #chronicillness #boxer #weightloss #effyourbeautystandards ❤  #strongnotskinny  #motivation  #mummyblogger #mom #mommyblogger #motherhoodthroughinstagram #fitmum #eatclean #fitfam #gym #homeworkout #fitnessgoals #fitnessjourney  #fitness #fitspo #fitspiration #instagood
Had a great time with these beautiful people at the @cincinnatizoo ! Even though we didn’t see much we still made our way around 💕 Can’t wait for more times like these with you all this summer!! Love you 😘
. alrighty y’all. i’ve honestly been dreading making this post, but at the risk of any kind of hate or negativity, i’m making it, and it’s a long one. on thursday i went to disneyland for the first time in a while with some friends of mine. i haven’t been since my health declined, and i really haven’t done any kind of all day trip like that of any kind since either. i’d been putting off a disney trip because i knew how draining it would be, and i hate to be a burden on whoever i go with by constantly taking breaks and resting. disneyland has always been one of my favorite places though, so when the opportunity to go came up, i finally took it. but of course, my body had other plans. i woke up that day in extreme pain, as i had the past few days. my knees have been awful the past two-ish weeks now, my back awful as usual, and my shoulders, neck, and hips bad as well. but i wanted to go. i wanted to go so badly. so i pushed myself and went. and, as i usually do, i pushed myself too hard. it was hot, i hadn’t dressed for hot weather, and i was drained before we even got into the park. exhausted and in pain and all we’d done was eat lunch and walk through downtown disney. it was then that i made the decision to rent a wheelchair. (cont. in comments)

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